Dr Lapp will be speaking in Dunedin, Wellington, Hamilton, Napier and Nelson with a final lecture in Auckland on 6 April.

In an order to maximise Dr Lapp’s time and expertise, WellMe, after much negotiation, has been able to arrange for a lecture to first year Registrars which will form part of their Continuing Medical Education programme.

WellMe is very pleased with this outcome, believing it vital that doctors who will be treating our members in the future have a better understanding of ME/CFS and Fibromyalgia.

The lecture will take place on Thursday, 30 March. Although this is a closed meeting, WellMe has been able to invite selected medical professionals and researchers with expertise in ME/CFS and Fibromyalgia.

A recording of a Dr Lapp lecture will be made available to our members in due course.

WellMe has a long term strategy for the raising of public awareness around ME/CFS and the advancement of better outcomes for our members.

As part of that strategy, and WellMe’s ongoing lobbying and active relationship building, Sandra Forsyth, Vice Chair and Eileen Brodigan, Special Projects Manager, attended a recent Labour Party meeting on health.

While there Sandra and Eileen discussed with Annette King our members inability to access the public health system and the financial devastation caused by chronic illness with further discussions to take place.

Photo: Sandra Forsyth, Vice Chair of WellMe with Hon Annette King former Minister of Health, current opposition spokesperson for Health, member of the Select Committee on Health and MP for Rongotai

In September we held our AGM. Guest speaker Dr Ros Vallings, spoke to the meeting about recent research findings presented at the 11th Invest in ME – Research International conference in London, June 2016 – the theme being ‘A New Decade of Invest in ME – Research’.

Dr Vallings has run a medical practice in Auckland since 1966 which for the past 35 years has specialised in those suffering from Chronic Fatigue Syndrome (CFS/ME) and related conditions. Dr Vallings has been involved in diagnosing and managing these patients, running regular seminars for these patients and producing an education booklet and a number of information sheets. Dr Vallings has published two books –‘Diagnosis and management of CFS/ME’ and ‘”Managing ME/CFS” a guide for young people.’

Dr Vallings is the medical adviser to the ANZMES–the national organisation supporting those with CFS/ME and has been involved in GP and student education at the University of Auckland speaking to medical groups around NZ. Dr Vallings has regularly attended international CFS/ME conferences and presented papers.She has visited a number of CFS/ME centres overseas and maintains contact with many overseas CFS/ME organisations

Dr Vallings is a member of the International Association for CFS/ME (IACFS), has reviewed the overseas guidelines for diagnosis and management of CFS/ME for the NZ Guidelines Group, with a view to providing a set of NZ Guidelines. Dr Vallings is also a co-author of the IACFS/ME Physicians’ Primer, and has participated in the international group producing the Canadian and International Consensus Definitions for CFS/ME. She is currently involved with an international group writing a Paediatric Primer for Physicians and has frequently been involved in collaborative research both in New Zealand and overseas.

In January 2008, Dr Vallings was awarded Membership of the New Zealand Order of Merit for services to CFS/ME.

In October 2016, Dr Vallings was presented with the prestigious Nelson Gantz Clinicians Award. The Award is given to a physician each year who emulates Gantz’s clinical acumen, his passion for medicine, and his empathy for people with CFS/FMD. Congratulations Ros!

Dr Lynette Hodges, Lecturer in Exercise and Sport at the Massey University School of Exercise and Sport has spoke to our Wellington Support Group meeting in June on the results of her study assessing responses to repeated exercise testing in individuals with ME/CFS, Multiple Sclerosis and healthy age matched controls.

The design of Dr Hodges’ study included physiological exercise testing validated by Staci Stevens in California and blood analysis to be used in research by Professor Warren Tate (Otago University) as he searches for a biomarker. Tests also included an arterial stiffness assessment, blood samples, brief neuropsychological tests, exercise testing lasting for approximately 12 minutes on a cycle ergometer and an exercise recovery questionnaire. All these tests have been used safely with people with ME/CFS in the past. Dr Ros Vallings, Staci Stevens, Dr Don Baken (also of Massey University) and Professor Warren Tate were all involved in the design of the study. It has been an exciting opportunity for individuals with ME/CFS to participate in a cutting edge piece of research within New Zealand. It will be an informative presentation.

JOEL MAXWELL – Dominion Post 14 May 2016

Michael Turner, 18, has been tired his entire life: even sleep is exhausting. Just don’t tell him he’s lazy.

Each day at home, before he starts his lessons, he does gentle exercises such as kung fu stretches to help beat the “heavy gravity, heavy pain” bearing down on his body.

Turner has become the young face of chronic fatigue, speaking out on Friday to help people understand why he’s not just a lazy teen, and to help other teens with his condition.

The pain kicked in through his body from the age of 10.

“I knew something was up, and that’s when doctors did many tests. All the tests known to mankind basically.”

The diagnosis was eventually fibromyalgia, a disorder that causes pain in muscles and around joints, exhaustion and concentration problems.

Michael Turner, with dog Softy, now studies from home after a diagnosis of fibromyalgia.

“I do sleep a lot, but unfortunately that sleep is not a deep sleep, so I still get tired from that.”

Last year he stopped studying at school, where his condition was not understood. He said school life pushed him so hard that he couldn’t cope with the pain and exhaustion.

He started learning from home on the Kapiti Coast, through correspondence school, which was more flexible.

On a normal school day he’ll get up around nine, have breakfast and then gradually get into his school work. He’s leaning towards a career in IT or web development.

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“Unfortunately when you talk [to people] about the problem, they do believe you, it’s just they don’t take it seriously.”

People with the disorder might seem lazy, he said, but that was not because they wanted to be.

“If you had the same condition you would be taking it easy, because of the pain. We’re listening to our bodies, instead of breaking them.”

Turner said he wanted to help other young people with a similar diagnosis connect with support groups like WellMe in the region.

Dad Darryl Turner said the process of gaining a diagnosis, which took years, was a “real journey” for their family.

He, mum Gundy Turner and their son had to use teamwork to get through the challenge.

“It’s very tough to see a child in pain, and with fatigue issues all the time. Waking up tired and foggy.”

Sandra Forsyth, vice-chairwoman ofWellMe, said fibromyalgia was one of a group of overlapping auto-immune disorders including chronic fatigue syndrome, which was now called ME/CFS.

“Chronic fatigue is not just being tired but absolutely bone-numbingly exhausted. For those who run or swim or train vigorously it is akin to that feeling of lactic buildup and exhaustion that follows a huge training session.”

New Zealand expert Rosamund Vallings said ME/CFS was usually triggered by viral illnesses such as the flu or glandular fever.

That set off abnormalities in the immune system, which produced “a whole lot of chemicals and hormones which cause all the symptoms, including extreme fatigue”.

Chronic fatigue was “a big issue” for young people, she said, with some data suggesting as many as one in 100 were affected after catching common teen disease glandular fever.

“The rate generally for the population at large is four per thousand … but it is definitely more common in young people.”

BONE TIRED

Sandra Forsyth said most people found chronic fatigue-inducing diseases rendered them invisible to friends and the wider community, “as they lack the energy to participate in everyday life”.

“This social isolation is very real and support can be hard to obtain.”

WellMe, has branches throughout the Wellington region.
– Stuff

If you, or your child has Fibromyalgia or ME/Chronic Fatigue Syndrome and would like to speak with one of our Community Support Coordinators, call free:

0800 632 847(Claire – Wellington Region)

0800 600 113 (Judy – Horowhenua)

Donate to WellMe and support the 2000 + people living in the Wellington/Horowhenua Region with ME/CFS & Fibromyalgia.

The following article, written by Sandra Forsyth (a member of WellMe) is a summary of former Wellingtonian Janice Roseingrave’s blog on research and medical news from ‘Janice’s Blog from Europe’. Janice is a long term member of WellMe, but is now based in Brussels.

Janice has lived with ME/CFS for 17 years and says she went to Europe with an open mind about how her illness was treated there. Janet wanted to know as a patient and a patient advocate whether anything had changed and whether CFS/ME was moving in a ‘good’ direction. Although Janet says she is heartened by what is happening, she says it would be good to ask her again in two or five years. Janice however was dismayed to discover that those in Europe and the UK are still fighting for recognition of their illness.

Janet’s blog primarily concerns one of two conferences held in the UK in 2013 – the Action for ME Research Conference held on 8 November 2013. Speakers included:

Dr Stephen Holgate, Professor of Medicine at the University of Southampton spoke on ‘A New Approach to Research in ME/CFS’ addressing issues affecting medicine as a whole which will go on to affect the ME/CFS population. Dr Holgate noted:
• Genetics are playing an increasing role in medicine.
• Cost of this technology is decreasing allowing for easier access.
• Pharmaceutical companies are downsizing and concentrating on illnesses that challenge (and have a wider market?) ie cancer. The average timeframe to produce medicines is 10-15 years.
• The way patients are treated is shifting. With access to the internet patients are often more knowledgeable than their GPs challenging GPs to ‘look outside the box’. Dr Holgate says ME/CFS is one of the best examples of this.
• Treatment is no longer ‘one size fits all’ but personalised to the patient – cancer is an example of this.
The importance of ME/CFS
• There appears to be no organ in the body that is affected by this illness.
• It is estimated between 0.4%-1% of UK’s population has ME/CFS ie 240,000–800,000 people.
• 50% cannot work ie 225,000 people in the UK alone.
Research is Difficult
• Amongst the medical profession, agencies and the ME/CFS organisations disagreement exists as to definitions, causes, mechanisms and diagnostic criteria.
• ME/CFS is accepted as being characterised by neurological symptoms, muscle pain with intense physical or mental exhaustion, relapses and specific cognitive dysfunction.
• Doctors and researches do not know causes or pathology of the illness.
• There appears to be different sub groups of people with this illness.
The Changing Focus of Healthcare
• There is a massive cultural change to shift focus to moving patients through the entire diagnostic process not just managing stages of diagnosis and treatment:
Information & Knowledge ↔ Health Practitioner ↔ Patient
Information & Knowledge ↔ Patient ↔ Health Practitioner
P4 Medicine Elements
• Personalised based on individual genome.
• Predictive to determine individual’s risk for disease.
• Preventative prophylactic (ie use medicine or action to prevent disease) measures to be taken to decrease risk.
• Participative prophylactic interventions will require participation of individual.
Professor Holgate’s speech can be heard on http://youtu.be.uZV49dGf12c

Sonya Chowdhurry, CEO of Action for ME then spoke about the UK CFS/ME Research Collaborative (UK CMRC) launched in April 2013 to bring together researchers, major funders and ME charities with the aim of:
• Providing a mechanism for those groups to work together in a collaborative and coordinated way.
• Increasing awareness of ME within the research community.
• Highlighting priorities for research funding to assist funders eg the Medical Research Council.
• Increasing funding for ME research.
Sonya Chowdhurry reported the Collaborative was committed to working collaboratively even where there were differences of view to help shape the future direction of ME research. An example of this is the UK Respiratory Research Collaborative established in 2006 with the aim of driving forward respiratory research resulting in a three-fold increase in research funding, research projects, programmes, centres, networks, Fellowships and PhD studentships.

Sonya Chowdhurry said the ME/CFS Collaborative hoped to attract researchers, grow their knowledge in a similar way and stimulate investment in high quality peer-reviewed research. Together members had the potential to make a real difference to those affected by ME/CFS.

Professor Holgate concluded the conference by saying ‘The influence of the whole is greater than the sum of individual parts’.
Janice also commented on the following:
ME/CFS Disease Register: Professor Derek Pheby – Faculty of Society and Health, Buckinghamshire New University and Action for ME Trustee.

• The ME/CFS Disease Register was originally developed at the London School of Hygiene & Tropical Medicine one of six projects funded by the Big Lottery Fund and part of the National ME/CFS Observatory project. The Register contains details of volunteers with confirmed diagnosis of ME. Initially restricted to a defined area it has been expanded to include those who participated in CHROME (Case History Research on ME).
• The Register encompasses long-term follow-up of participants shedding light on prognosis and outcomes of care about which little is known.
• Linkage to the UK ME/CFS Biobank database provides longitudinal clinical histories to augment detailed data already collected from participants.
• The Register will enable selection of sub-groups of ME/CFS participants and enable defined research options.
• During the project IT applications will align with those at Buckinghamshire New University enabling all diagnoses of participants to be added to the database including those biobank participants not currently in the Register.
• This will be followed by a two year follow-up of all participants.
• A research programme will be commenced including
o Five year follow-up of CHROME participants
o One year diary sample study of the relationship between severity of ME symptoms and episodes of infection
o Collaboration with other researchers who may wish access the Register for their own researching including genomics and intervention studies.
For more information visit http://www.actionforme.org.uk/get-informed/research/our-research-related-activitymecfs-disease-register
Dr Pheby’s speech can be heard at http://youtu.be/a.fPLSKnTCU

Biobank: Dr Luis Nacaul – Faculty of Infections & Tropical Diseases, London School of Hygiene & Tropical Medicine:
• UK’s first ME Biobank for ME funded by Action ME, the ME Association, ME Research UK and a private donor.
• Stores blood samples from clinically well characterised cases of ME/CFS and health controls enabling researchers long term access to cohort of patients with biological, clinical and laboratory data attached.
• Dr Luis Nacaul established CURE-ME – Creating clinical and biomedical Understanding through Research Evidence for the ethical study of ME/CFS.
Refer http://www.Ishtm.ac.uk/itd/crd/research/cure-me

Understanding Muscle Dysfunction in ME/CFS: Professor Julia Newton – Institute of Aging and Health, Newcastle University, Newcastle upon Tyne, UK:
• Lead researchers were Professor Newton and Dr Phil Manning, Institute of Cellular Medicine, Newcastle University utilising funding by Action ME UK.
• Study explores why muscle cells in those with ME/CFS have problems with muscle energies and explain the switch in energy generation with the aim of understanding fatigue and how this can be helped.
• Development of laboratory system to provide experimental system allowing testing of drugs potentially able to treat fatigue and alter metabolism in ME/CFS.
Refer http://youtu.be/AevOA161Hdg

The Role of Sleep in ME/CFS: Professor Jackson Ellis, Professor & Zoe Gotts PhD Student, of Northumbria Centre for Sleep Research:
• Sleep is a significant issue in 87%-95% of those with ME/CFS (data collected from 32 studies throughout Europe using thousands of patients). The main problem being no consistent pattern of sleep abnormality.
• Three factors being considered
o Total Sleep Time (TST)
o Sleep Latency – how long does it take to get to sleep
o Sleep Arousal – how many times awake during the night.
• Findings have found four groups with observable traits or characteristics:
o Group 1 – Sleep Onset Insomnia
o Group 2 – Normal sleep but unrefreshing due to pain or sensor gating (neurological process of filtering out unnecessary brain stimuli from possible environmental stimuli)
o Group 3 –Hypersomnia
o Group 4 – Sleep Maintenance Insomnia.
• Preliminary findings show 92% of those with ME has abnormal sleep patterns with no discernible consistent pattern of abnormality.
• Cortisol appears to (a) stable over successive days in ME population and (b) slightly elevated compared to controls.
Refer http://youtu/be/eCtp-6W5dmM

Cognitive Dysfunction in ME/CFS: Professor Annalea Venneri, University of Sheffield:
• Studying how cognitive symptoms and brain processes change when those with ME experience difficult levels of fatigue.
• Aims to uncover links with brain physiology and function that are associated with this condition which may help in finding and directing new forms of beneficial treatment for those with ME.
Refer http://youtu.be/1ll3BkJOwXQ

Comment on the Value of Patient Groups for Medical Research: James Fogarty speaks to Professor Bernie Hannigan about her report into the current research landscape in Ireland:
• In other countries the patient group is involved in all stages of research, helping to prioritise areas of research of the most value.
• Patient group contributes to design of research study, has involvement in carrying out research and disseminating findings.
• Participation does not involve a lot of funding but requires co-ordination and culture shift for researchers and funders to know it is right to involve patient group.
• Studies with patient group involvement frequently have better more usable outcomes than those with no patient group involvement.
Refer http://bit.ly.19Wamao – http://www.medicalindependent.ie/40130/funding the future

Predictors of Post-Infectious Chronic Fatigue Syndrome in Adolescents – Journal of Clinical Nursing Reprint – 20 December 2013:
• Aims & Objectives – to explore the experience of an adolescent with CFS.
• Background – despite research CFS is poorly understood. Adolescents are often unable to attend school and lose social connections with friends. The challenges they face affects their quality of life.
• Method – 6 boys and 12 girls aged 12-18 were interviewed on their experiences with CFS.
• Results – the sub-themes reflect their experience of social isolation, their own and others understanding of the illness and hope for the future.
• Feedback included:
o ‘on the outside of life – locked in and shut out’
o ‘the body, the illness and me’
o ‘if the illness is not visible to others, does it exist?’
o ‘handling life while hoping for a better future’
o ‘sometimes it feels as if the world goes on without me’.
• Conclusions – not being able to be with friends or attend school made the adolescents feel different, forgotten, alienated in their own bodies, invisible to themselves and their surroundings. Some spent less time with friends and more with parents which was felt a threat to their independence and development. Over all they managed to envisage a better future despite all their difficulties.
• Relevance for Clinical Practice – to provide effective support for adolescents with CFS and provide insight to health professionals.
• Recommendation – health centres function as resource centres for patients and healthcare professionals.